Hi! Hope you’ve all had a wonderful weekend, and coped ok in the crazy heat we had yesterday!
Not only was it the hottest day of the year, but the longest day of year too. Honestly, I’m not sure if I’m quite ready for the long days to start drawing in quite yet!
I’ve got so much going on at the moment with the wolf. I honestly don’t know where to start with today’s blog! But I am going to keep it short and sweet as it’s gone 8pm, and I’m exhausted and not feeling too good. But if I don’t write a blog this week, I only have even more to talk about in my next one!
I’ve been painting a 5-panel fence today. I thought I was ok to do so. I felt ok at the start, but I’ve now realised it’s been too much for my body. I started to struggle halfway through painting it, but I didn’t want to stop and leave the fence half done. So I carried on, thinking I would be ok!
I think it’s the fact I’m on day 4 of my tapering dose of steroids, and it’s starting to have a knock-on effect on my body, as expected!
I wanted to get the fence done weekend, as I could potentially not be well enough for the next four months to do so. So the last few days, I’ve just been trying to get jobs done while I can. But the way I’m feeling tonight, I feel like that time is running out!
Long Four Months Ahead
It’s going to be a long four months ahead! I’m tapering my Prednisolone by 0.5mg every 4 weeks, from 7mg to 5mg. 4 months is if everything goes to plan. I failed earlier on this year, but now I’m on a higher dose of Methotrexate, my nurse is hoping that should prevent my body going into a flare-up (the flare-up was the reason I had to stop the last tapering attempt), and it’s just the awful withdrawal symptoms I will have to just ride out…..the fatigue, weakness, anxeity, low mood, low apperiate, and the list goes on!
Honestly, I’m absolutely dreading it! Ideally, I would have liked to have lived my summer feeling well, and then started the tapering come autumn, but my hospital team had other plans! My specialist nurse is giving me a lot of support with regular telephone appointments, which is really good! So hopefully, that will make the journey a little easier, and harder to give up when times get tough!
20mg of Methotrexate
Next week, my dose of Methotrexate increases from 17.5mg to 20mg. Then in 4 weeks time, if my bloods are ok, I will go up to 25mg, my maximum dose.
Honestly, already, just been on the 17.5mg, I’ve noticed an improvement in my illness!
I’ve mentioned it a few times over the past year, my dose of Methotrexate has been too low. I used to be on 20mg for years. But then about 18 months ago, my dose was dropped down to 15mg, because there were some worries with my liver, and my Lymphocyte count. My liver did improve once my dose was dropped, but my Lymphocyte count has continued to stay at almost zero!
My Liver Isn’t Happy Again
Just 4 weeks of injecting 17.5mg dose, my liver readings on my latest bloods are not good again! First time they’ve gone out of range since dropping my dose down to 15mg, 18 months ago.
When I spoke to my nurse on Thursday, she said it might be down to my Iloprost infusions. I’m not convinced, as my liver has been fine after all my other rounds of Iloprost. But I really hope she is right! I really want to get onto 25mg of Methotrexate! I feel like this dose could be the icing on the cake for me. The dose that will make my body strong again, like it was back in 2022. The year I felt invisible to the wolf! It was werid, but it was brilliant! The wolf and I were best buddies!
Other News
One of my veins is still sore, bruised, raised, and inflamed from my Iloprost infusion. I’ve also noticed my hands and wrists have gone onto developing even more scars from all the cannulas I’ve had!
I’ve got lovely Lupus rashes on my upper arms. Perfect timing for next week when I’m being a bridesmaid at my sister’s wedding! The wolf always knows when to put on a show! Good news, my face is looking good at the moment! My Tacroliumus Ointment is doing a fantastic job of keeping the rashes down. I know it works because the minute I decide to stop using it, thinking I don’t need to, the rashes are back like lightning! Dermaology did prescribe me a different cream for my Lupus rashes on my arms (which I must not use on my face), but not sure what I’ve done with it, nor what it was called. Probably, need to look into that!
I’m still getting bloods done every fortnight, so I’ve got the fun of that next week!
Oh, and I’ve got a mouth full of ulcers! Hopefully, that’s not a sign of my Neutrophils being too low, like it has been in the past, and just the fact my body is feeling a little stressed from the lack of Prednisolone it’s now getting.
That’s all from me this week,
Goodbye for now
Emma
xox
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